These posts may be a little repetitive or jumbled but. they’re copied from my support group boards, one for microscopic colitis and the other Celiac. I want to share my most accurate story to help others- these were posted while I was going through it. Thanks for reading. xxoo
June 10. 2012 – already been very ill since the previous Christmas
I have so much information I want to share- I don’t know where to start… I had been the sickest I have ever been since Xmas 2011. Suspected colitis flare- I’ve had them for years and have always been able to pull out of them (by eating potatoes/yogurt/rice ONLY for a few days). I didn’t have a Dr up here (moved here 7 yrs ago my old GI is 160 miles away-he had suspected colitis)
So mid-Feb rolls around and I am so sick- watery D, knife pain starting at 6 am- left me going to the bathroom and curled up usually from 6am to 12-1pm EVERY DAY. I started to get real wobbly and depressed. I couldnt stand without support, I was really weak and shaky. Made an appointment with a new GP and it’s not for 5 more weeks!! So I asked my DH to bring me some Boost. He brought Boost with fiber (bad bad-gas, pain. cramping). Drank them anyway then I started drinking these meal replacement/nutrition shakes that I feel literally saved my life- definitely kept me out of the hospital- because that’s where I should’ve been! I got my strength back. Gained my weight back. Get in to see the GP and he sends me to a GI. SIX more weeks until this appointment!! I also have asked this GP guy to get my medical records up here- we have a family history of IBD and my Mother is dead and so is my grandmother (colon cancer) Did I mention I live in the boonies??!! I’m also travelling 30-40 miles each way to see these Dr’s and to the hospital. That’s fun when you have watery D let me tell you! 😛 So I get in to see her and ask if they have my medical records and she says no not yet- I try to tell her my family history- and my history and she up and leaves and sends the nurse in to finish with me. -I take note of this.
Wow- the next nightmare- I had the colonoscopy from hell as far as admitting- it was a freaking fiasco! So, I wake up from my colonoscopy and someone tells me they suspected Celiac, In my head, I’m like no way….the one thing i can eat is saltine crackers- but then my head says- but you’re not better… So next I get home and start looking into this celiac thing. WOW– I have NO DOUBT- I have had this my whole life….so did my mom…so did my grandma- Looking at my medical history It’s ALL THERE. I was a preemie (2lbs 3oz-1964 they didnt expect me to make it) I was told they had to have special formula for me. I have had a rash/allergies on me somewhere my whole life. I had 2 “rotten” baby teeth. I had extreme leg bone pains my whole childhood and they adults would say- that sounds like rickets- she can’t have rickets…SHE HAD RICKETS!! 😦 I had my tonsils removed. I used to miss the bus all the time in the morning because I was on the potty. In 7th and 8th grade I had extreme dermatitis and eczema all over my body-especially inside knees and elbows. I had been allergy tested at age 4 and supposedly was allergic to a bunch of things that I knew didn’t make me sick. So I was punished repeatedly for “eating chocolate” –so let’s add the stress and anxiety to my life since about then. In 11th grade I got extremely sick again-under a lot of stress…I had bronchitis, eye infections, sinus infection, ear infection and laryngitis all in a 3-4 month span. They tested me for mono, guillian barre, and EBV. Eventually I got better.
Suffered from extreme menstrual pain 3 out of 4 weeks a month- also D and cramping. Finally I had a GYN who listened to me when I told him I was in pain every month. Never was medicated for the menstrual pain. He told me my uterus was in contractions- yeah labor pains every month!! He did a laproscopy and d/c and I never stopped bleeding after that. He removed my uterus and said that it “looked like swiss cheese” THIS has always bothered me- WHY??!! That sounds like an auto-immune response to me- like my body is attacking it- SO WHY??!! Huge amount of stress in my life at the cookie store I was trying to manage- with idiot employees. My health crashed again. GYN sent me to a GI he suspected colitis. Did a sig scope in the office and didn’t see anything. He put me on some meds to control-nausea and D and some nexium. Having body aches and pains. GYN now sends me to a Rheum specialist where I am xrayed all over and examined. I don’t recall any blood work being done in that office. Meanwhile- I go to a new chiropractor. He tells me I have degeneration of a 60 yr old (i’m abt 40 at this point) in my lower back- have I ever been in an accident? NO.
So now back to the colonoscopy. I wake up and she tells me this info-suspected celiac. Nice nurse lady who wheels me out says you will feel so much better after you quit eating gluten. Say okay- let’s see then. I cut out the gluten…in 48 hours I had normal BM!! WOW- okay that speaks volumes- gonna stick with it.
THE DOCTOR SHOULD HAVE ORDERED BLOOD TESTS IMMEDIATELY AND SHOULD HAVE TOLD ME NOT TO STOP EATING GLUTEN UNTIL I WAS TESTED. SHE NEVER EVEN SPOKE TO ME ABOUT GLUTEN!! IF YOU ARE READING MY STORY- PLEASE GET THE BLOOD TESTS DONE BEFORE YOU STOP EATING GLUTEN. IT CAUSES ME TOO MUCH PAIN AND NEURO SYMPTOMS AND IT’S NOT WORTH IT FOR ME TO START EATING GLUTEN AGAIN TO GET A DIAGNOSIS 😦
Since my colonscopy– WHICH is supposed to be painless?? I HAVE BEEN IN PAIN!! 21 days! I told the Dr AND her nurse when I was there on friday. THEY IGNORED ME!!> I just want to add that I have been on pain meds maybe 8 times in my life- I am the last person to want drugs, I like to take the natural route if I can-my Mom was a walking pharmacy and I refuse to go there. So I get home and look at the area and my lower left pelvic and that area is clearly swollen, hubby agrees. DAMMIT!! NOW WHAT!!?? I have to get the endoscope biopsies tomorrow! Do I ask to speak to another Dr or maybe a patient advocate at the hospital? I want this on my file that I have had pain since the last surgery–in case something happens! Oh and on top of that- I had been gluten-free for 20 days and now I had to eat a cookie (she didnt tell me to do that either!) so that I get a positive read. Should I eat another cookie today? (or can I just lick it- it makes me sick 😦 – but I want my test results to be correct!)
When I ate the cookie on friday? Within THREE MINUTES- I was having a reaction. I was shaking in THREE MINUTES!! Then in 5 minutes the loud gurgling started….you all know what happens next! Also- the GI Dr Tells Me-grr- I am hesitant to label you Celiac because “it is a difficult lifestyle” OMFG!!!! ARE YOU KIDDING ME??!! Like my body destroying itself isnt more difficult!!?? So I tell the nurse I went gluten-free. She says oh one of my friends is on that fad diet. SAY WHAT? You mean to tell me…1 in 133 people have this- 97% undiagnosed…and NONE of your patients are on gluten free???? CAN’T WRAP MY HEAD AROUND THAT ONE!! She did diagnose me with LC (lymphocytic colitis) per the colonoscopy results. Also forgot to add- NEITHER of these Dr’s have taken a drop of blood to test. All I did was a stool test. Shouldn’t they be looking at my blood?? …so that’s my crazy introduction- i know it’s all over the place there’s just so much more info I am leaving out… It’s really nice to be with people who I know understand. Thanks for reading. xxoo next post- will be Mom’s history…she was a mess. poor lady 😦 i am having a real hard time with that. AND THE FRIGGING DR TOLD ME TO CALM DOWN WHEN I TRIED TO TELL HER. FML. I don’t know what to do or where to turn.
My poor Mom was sick my whole life. She was always a skinny little thing, had trouble with her weight-was labeled anorexic at one point. She had 2 premies and a miscarriage. She was given a hysterectomy after my sister was born at age 25. She had para-thyroid disease. She had to have her stomach removed at age 29 because it was “ulcerated”. I remember numerous surgeries- they gave her a goat’s stomach but ended up making her a pouch I believe. She also had colitis & crohn’s. Allergies/rashes. She had kidney stones for as long as I can remember. She had back and bone problems- had to have multiple fusions on her neck and back. Her teeth were breaking- she eventually got dentures. She got breast cancer and beat it. At age 64 her little heart gave out. She just didn’t wake up one day.
She has a Twin- but I want to post about their Mom first.
My gma was always cranky and ornery. She had thyroid issue, fibroids and had to have her gall bladder removed. She would always say she hurt and was tired. They found a tumor in her intestines- colon cancer. She had surgery and flourished afterwards.
She looked and felt better than she had her whole life- she’s been on a liquid and soft diet for those months. Cancer came back and it killed her. I read that undetected Celiac leads to colon cancer!
My Aunt (mom’s twin) We are going through many of the same issues at the same time-right now. She has MC also!! She has rashes and edema for a couple of years now. She has RA and chostocronditis. She has also beaten breast cancer. She has trouble with weight gain and bloating and watery D daily as well. I am working on getting her tested for Celiac as well. Her new GP told her he didn’t think she had it. I read if you have MC you should be tested for celiac–trying to get her to get tested!!!
Also- My Mom, Aunt and I have all had to have hysterectomies by the age of 40- red flag there!!
My experience at the hospital the other day…names have been changed to protect the innocent…!! (for NOW)
first of all- the thing that is not their fault is that mcXXXXX has taken over XXX-mi hosp as of January and they have nothing but problems with their new computer system.
So Tuesday, after the home phone being out and me covering my butt getting my tracfone number to them (gi’s office)…when i spoke to girl Monday to give my cell number- she says she has my ph call apt down for 1:30. I HAVE A CARBON-YELLOW+ they have the original- it says 12 freaking 30 on it.
so tues- 12:10 I go offline (I live rural-dial-up only here) and wait for the phone to ring- by 2pm I am pissed (also dealing with att right?another long story!!) so I call- she apologizes and says sorry she has had a hard time getting me to come up in the system. so she still can’t – gets my birthdate and says she will call me back. (chick also had probs when I went for my ekg the week before-same hosp) so half hour later she calls and I spend 40 minutes with her on the phone answering questions. OH- and I have answered ALL of these questions twice already on paper- in GP dr office and in GI office!!
so I get to hosp and admitting tells me she had the hardest time finding me in system. she gives me my wristband- it says (both my last names together) no hyphen. no biggie they don’t always let you hyphenate. so they call me back and nice nurse lady cant find me in the computer-fml I only moved 80 feet from the last lady and I am lost again. she takes my blood pressure and ask if I on high bp med, I say no I dont have hbp- I am stressed btwn this fiasco and screaming at att all morning. so anesthesia dr comes and says just relax I’ll start your iv and you’ll feel better. so then they move me to a bed- and at least 2 other people come to start my iv- who started her iv?? blah blah. GOOD THING I KNOW! FML!!! new nurse comes and starts on the computer. asking me when I last drank and I said I have to pee though and she looks at my iv and says no wonder he has that all the way open and it just dumped 10 oz of fluid into you already. (versed) so then she can’t find all my info on the computer- from the pre screening 40 minute phone call. so we have to do that all over again!! it was 1:45 by the time they took me! next thing I know they’re waking me up and someone tells me they suspect celiac and not going to talk to me see me in 20 days. I don’t even remember getting dressed. so then I get to come home and deal with att again! and that’s another whole bunch of freaking incompetent IDIOTS!! I’m ready for a padded room now. as long as I can have it gluten free. lol
~that’s my story and I’m sticking to it 😉
Also- had my BP ck at the Dr on Fri. Perfect- no HBP. (yay! something good)
~THIS IS FROM A SUPPORT MEMBER EXPLAINING HOW I WAS INJURED IN THE FIRST SURGERY~
*The residual pain that you experienced following the colonoscopy may be due to a tear in the mucosa of your colon caused by a combination of the passage of the scope tube and overinflation (the colon is usually inflated with air pressure during the exam, to make the entire surface easier to see with the scope). The tear is usually in the form of a longitudinal split, but as far as I’m aware, it rarely goes deeper than the submucosal layer. Unfortunately, this is not a rare occurrence, but most doctors tend to downplay it, since they don’t want the patient to know that something they did during the procedure caused damage. Usually, those splits heal after a few days to a week or so (depending on size and circumstances), but if they become infected, complications can result. Occasionally, the colon is perforated during the exam, but when that happens, symptoms usually become very serious very quickly, and emergency surgery is required to repair the damage, in order to save the patient’s life. Research shows that this happens more often than most GI docs will typically admit (in 3 to 6% of cases), and the problem is much worse at some hospitals than at others. I’m not aware of any “official” statistics on the percentages of colonoscopy procedures that result in splits, but I would guess that it probably occurs in roughly 10 to 20% of procedures, on the average. In most cases, the splits are very minor, and the patient will not even be aware of them, because they don’t cause any discomfort or other symptoms.*
I believe this is the case because I take peppermint oil pills that soothe the inside of my gut. When I took them they didn’t soothe the area at all. I couldn’t take any aleve or motrin ect due to surgery. Ice is the only thing that helped it.
IT TOOK ME 6 WEEKS TO HEAL FROM THE “PAINLESS” COLONOSCOPY- AND IT STILL BOTHERS ME SOME DAYS!! (even now yesterday and today and it’s Aug 15th!!)
I told the GI Dr. I have always gotten sick when overburdened with stress. She says NO. I said YES-nodding my head and looking into her eyes!!
She is not listening to me. But she is also of western culture so I am TRYING to believe she is just “different”. That she just wants to see the biologic tests. Fine, but, I hurt since the last procedure and that needs to be addressed.
I have shared your posts with my DH, in case I need backup- but he has been with me for 17 years, he knows all 😉
We plan on going to the hospital early tomorrow and I want to speak with an advocate or another Dr to express my concerns with this painful area.
T**, a split makes perfect sense. I have been telling my DH since it started hurting that it felt like she took a strip out of me- thinking it was the biopsied area that was hurting. I can actually see – a swollen strip, on top of- the whole side being inflamed. AND you know what has helped it? ICE. Icing it is the only thing that takes the pain away. I believe you are right and thank you so much for the information. I’m a little more than pissed to think that they were running late due to my admission and may have rushed me through the procedure causing damage!!
I made it through the surgery. I’m so full of anxiety right now I can barely function. Between that and I don’t know if it’s fog brain or still from the anesthesia on Monday.
In a nutshell, I reached out to the patient advocate at the hospital before surgery. She saw the swelling and said she would speak to Dr and says it might be scar tissue.
Then during admitting the lady says okay we need a urine test. As we are walking I ask her why we need a urine test? She says for pregnancy. FML PEOPLE!! I said Honey, I assure you I am not pregnant, I had a hysterectomy 10 yrs ago!! JEEZ!!
Woke up from surgery and was told I also have an ulcer. I told the GI lady there is a gene test- do the gene test- why aren’t you testing my blood??!! Was given Omperazole. I have an appt with the GI on the 28th. They tell me if I have a rash to call them. I point to the new rash on my arm? Oh that’s okay…my DH about hurt that lady.
Since then I am barely functioning. So, I called my GP’s office today and spoke to his nurse. Told her I need someone to talk to me, I want someone to look at my history and no one has taken blood ect- told her my whole story about being hurt during the first surgery and she can hear that I am totally stressed and full of anxiety. She told me she was going to talk to GP Dr and call me back. She calls me back and says he doesn’t want to see me he wants the GI doc to treat this(70 mile trip!). THE LADY WHO WONT LISTEN TO ME AND TOLD ME TO CALM DOWN!! So the nice nurse tells me she is going to call this GI’s office and they will get back to me. NO ONE HAS CALLED.
I am sick and stressed and depressed and just crying and alone.
Oh and to top it off- my computer crashed last night…everything is broken.
No one from either Dr’s office called me back. Still suffering from the anxiety as well as nausea and a terrible headache at the base of my skull- I think tension headache, I feel it in my jaw also. My neck and throat/glands are still swollen from the 2nd surgery. I can’t eat-no appetite and still having a hard time thinking.
I just don’t know what to do, I have been sick for so long and I want to start getting better. The D has gone but I still feel shaky. I read somewhere that to heal you need to give up dairy for a while so I picked up some almond milk and made myself a small shake this morning and had some powerade also. I don’t know what to eat- there’s plenty of food but nothing sounds good. KWIM?
DH is trying to help. He wants to get me out of the house tonight, we’re supposed to go for a drive through the woods to the lake- it’s back on state land, love it back there. Hope it helps.
(support member name), your integrated Dr is just what I need. How would I go about finding someone like that? I don’t want drugs(my mom was a walking pharmacy)- I want to heal and I can tell that I am out of whack–it seems like every sense has been affected. That’s what’s bothering me so much about the blood tests. I want blood analysis done to see where I am deficient! Gawd you’d think I’m asking them to hang moon or something.
Crazy that it’s too much for them to find out if you’re anemic and need iron ect. I don’t get it!! 😦
Still confused about the tolerances. I stopped the dairy. I know that gluten is the bad one. I have immediate reactions to it- they scare the crap out of me now because it seems neuro. I have been having vision problems, unsteady on my feet, anxiety, tremors, headaches and brain fog. Stressing me out- I’ve been off gluten for a while and I’m at home (hermit) so not getting glutened by cc. I hope that part gets better soon. It’s not me!! I feel like an alien has taken over my body….am I maybe detoxing or something?
I sure wish I had a decent Dr to talk to.
Glad I have you all in my corner!! You seem to know more than my idiot Dr’s do!! Sheez- I seem to know more as well….GI never even told me to stop eating gluten! WHAT AN IDIOT!! whooops there goes my anxiety
Not sure if I mentioned this part of my Mom’s history. In her 20’s her stomach was so ulcerated that they ended up removing it and giving her a goat’s stomach. It didn’t survive either but she always drank goat’s milk. poor lady.
Last night I was sitting here thinking about how many different Dr.s I have been to throughout my life not to mention the chiropractors and deep tissue massage therapists (the ones who hurt you-to release trigger points) and no one listened to me. Every time I have gotten sick there has been an overburdening amount of stress in my life and my health implodes! I told this to my GI and she says…no. OMG!! I looked at her right in the eyes and nodded my head and said Y E S !! My anxiety and emotional state are huge triggers.
I still don’t know my next course of action with these idiot Dr’s. I don’t want the GI any longer- that’s for sure. I have a pharmacist friend up here who has celiac–going to ask him who he goes to.
Oh- turns out, My old GI down in Troy- is a Celiac specialist….Might make the 300 mile trip for his advice.
I went to him and he’s the one who did the sig scope in office and stool sample 7 yrs ago. He diagnosed me suspected colitis and said wait for the next flare and we’ll do a colonoscopy. Then I moved…
June 22, 2012
Hi (support members), I have been BEGGING my Dr’s to take my blood to test for deficiencies. I KNOW that is part of my problem!! They still haven’t taken a drop of blood. I hesitate to supplement without knowing what the deficiencies are on top of not wanting to screw the tests up when they finally do get around to testing me! I know I would be much farther along in my healing if I could HEAL!!!
I’m just in L I M B O.
I got my water kefir and kombucha babies yesterday. Have them started in opposite ends of the house. I am going to start with the water kefir…very slowly…some people get detox rashes…I’d like to avoid that. I get rashes very easily so I want to be careful. Looking forward to the benefits of the natural probiotics 🙂
I think I am doing better since cutting out the dairy. I also stopped eating onions and tried to do without the soy…but I went back. When I was a baby, (my aunt telling me) I had to have special formula. I am assuming it was soy. The only nutrition I have been getting since Feb are these Spirutein shakes I drink. I had been blending them with milk and ice but when we started talking about nixing the dairy, I stopped drinking them. Boy did I crash. So yesterday I had one I made with almond milk and I had a very good day…only a little pain -lower left/colonoscopy pain spot but that was triggered by stress–(MY KITTY STUCK IN A TREE-IT NEVER ENDS-lol?)
Hoping that I am well enough this weekend to get out on the golf course! I have only been able to golf twice this year–before the colonoscopy and the “tear”–I haven’t been able to swing my club. I REALLY NEED TO SMACK SOME BALLS!!! lol
So, I went to that stupid Dr today and she said my biopsy results for celiac came back negative. I asked her how many samples she took- she said 6. Okay wait- back up when they took my vitals- my anxiety-heart rate and BP were through the roof! She tells me to go to GP- I said GP wouldn’t see me until you sent him something= I TRIED to get help!! She didn’t talk to me at all about the LC. Guess it ain’t no thing…(aaahh!!) she said I have GERD and a hiatial hernia as well as the ulcer she found in my stomach. I begged her to keep testing because I KNOW I HAVE THIS!!- When you Have it–you know!! You KNOW?? (sorry i’m going crazy) So she Says….I hate to run the celiac panel because it is very expensive…SCUSE ME WHAT??!! I SWEAR TO GOD- AND I HAD MY DH THERE WITH ME FOR A WITNESS- IT’S NOT JUST MY CRAZY BRAIN!! I SAID- I HAVE INSURANCE!!
So she says- well if you feel better gluten free then stay on gluten free and i will see you in sept. Going dairy free and gluten free are too difficult- AND WITH THAT? DONE WITH THIS DOCTOR. YOU WILL NOT SEE ME IN SEPT.
READY FOR BEER AND PIZZA!! If I end up in the hospital will they help me??
(added water kefir probiotic drink to my daily routine)
D**, I have read that about the reactions to kombucha. I still have 3 weeks to go before I can brew- mine was dehydrated, it takes 4 weeks to come back to life. HOWEVER, I have been enjoying the water kefir sodas and they are wonderful!! So far I have made lemon/ginger and pomagrante/red raspberry.
With that, you soak the “grains” (they’re not grains but cultures-they call them grains to mess with us) they’re like little clear jelly blobs. I add 1 tbs of organic sugar to the water-dissolve the sugar and put the grains in- I use a qt jar. Coffee filter and rubber band the top and let sit for 24 hours. Then you add some juice/and/or fruit fresh or dehydrated. Cap it- I use mason jars but with saran wrap over the top first because metal isn’t good for the cultures. Screw that lid on tight and let sit for another 24 hours ONLY- the fridge after 24 hours. But i have been drinking mine as soon as it’s ready. It gets a little fizzy like a wine cooler. They are wonderful! Trying not to drink too much for the same reason…you can have a reaction…but they say it’s flushing out the toxins!!
I think I need to do some independant testing. I want a diagnosis and some HELP.
they’re just telling me i have all this shtuff and shoo me out the door- they’re not helping me. shi* I can get nexium over the counter cant I? That’s all they’ve given me. Not that I want to take pills…I want to heal and get better and i told her that.
OH- she also said that giving up gluten is hard enough she doesn’t want to have me give up dairy and eggs and soy and onions So I said Look, I joined a support group and they are helping me- they live this. I wasn’t feeling any better so I gave up the dairy. Really just replaced my milk with almond milk- she doesn’t want me doing that? WHY? She’s a sadist I swear. still have that pain- lower left from the colonoscopy- funny it never hurt like this before that surgery.
OKAY I’m done b^+chin now. 😛 xxoo
Hi My friends, I wanted to post an update. Tried again to get in to my GP after waiting 2 weeks for my blood work to get back to him still to get treated for the anxiety. Had spoken to his nurse and told her the whole ordeal again and asked her to gather as many records as she can get from before I moved here. I told her I need someone to look at the whole big picture here and not all of the symptoms. She agreed and set a half hour appt for me. The day before the appt she called me and he doesn’t want to see me because he says he knows nothing of gluten-free or Celiac. 😦 She said he can give me a referral to a university hospital 200 miles away or a place 60 miles away that has a team of 4 gastro/hepatology Doctors. Also the Dr she mentioned sending me to is a D.O. Meanwhile- I last spoke to her on Tues and she left me hanging the rest of the week 😦 I still do not have an appointment and am trying to stay cool and calm because I am still having anxiety issues, heart palpitations, headaches, dizzy when I stand up, memory loss-the Dr issues making it 100 times worse I’m sure.
Amazing how going gluten free stopped the LC issues! (lymphocytic colitis)
D**, here is some info on using kombucha for your skin! I just started my kombucha brew yesterday. My Scoby was dehydrated so I had to let it revive for a month. I used black and green tea for the starter and the first brew is green tea.
Totally loving the water kefir! My favorites have been ruby red grapefruit- tastes like squirt but less sweet. Lemon ginger, Mojito- lime/mint, wild red raspberry, blueberry lemon. The blueberry is killer- it’s so dark purple and you can’t see through it= full of antioxidants 🙂 and wow- it was so alive and fizzy it was fizzing like an alka seltzer was dropped in there. yum!
Another friend suggested I go Paleo/Primal in order to heal faster but I’m not willing to give up my kefir!! Ferments aren’t allowed.
Hope you’re all doing well! I’m hanging in there. xxoo
July 22, 2012
T**, I’m with you= I think it’s high time he educates himself!! His nurse who has been helping me was also sent to the same GI and got the same results as me–still is no better and is floundering on her own also. She now believes she also has it (Celiac/gluten intolerance) so I hope she can persuade him to learn about it!! So frustrating to be doing this trial and error because of ignorant doctors. I almost hate them at this point but I am still hoping to find me a hero Dr! Sad isn’t it!!??
At least the potty issues have stayed resolved. My Aunt who also has MC/CC had been suffering from chronic D also. She quit gluten and the D stopped for her as well. Her Dr’s don’t want to test her either. 😦 Makes me crazy when they LOOK at you and because you’re not visibly malnourished and skinny they don’t think you’re sick!! The GI actually said that to me- that she can tell by looking at someone who has Crohn’s that they are sick. Don’t know why the hell she was talking about crohns?? I WAS SPEAKING TO HER ABOUT CELIAC! I wish this pain on them- I truly do wish they all get it!!
D**, I can’t wait to have baby scobys! 🙂 Trying to get my water kefir to reproduce. I have about a cup of scobys after a month. They’re working great. Playing with the sugars and molasses so I have 2 jars going. Fun science projects.
I am interested on the “WHY” to no ferments also. I didn’t get that far, my brain was on overload! Do you do Paleo? I was reading the Paleo forum. It seems as if a lot of you still eat rice. I was also wondering about beans. I like to eat black beans and garbanzos/hummus. I make them from dried.
Beans have never given me a problem or made me gassy so I am hoping to keep them in my diet as well. So confusing!!
Thanks for your help! 🙂